Collaborative Research Groups

PCORnet’s Collaborative Research Groups (CRGs) catalyze new multi-network research. Each below CRG team is composed of content experts from within the Network focused on generating high priority, engaging research questions to leverage PCORnet’s unique infrastructure.

The CRGs collaborate with stakeholders including patients, caregivers, advocacy groups, providers, and funders early on to move research forward more quickly and more efficiently.

While the high-level focus of each CRG is broad, they may also contain Research Interest Groups (RIGs), that are dedicated to more specific research areas. For example, the Pediatrics CRG has specific RIGs for Autism, Cerebral Palsy, Epilepsy, Pediatric Hypertension, and Sickle Cell Disease.

In addition to developing high priority research questions, the CRGs develop common data elements relevant to the CRG focus area for use in the Common Data Model, advance the science of patient-centered outcomes and pragmatic research through innovative methods, and assist the PCORnet Front Door with research requests.

The Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG) brings together patients, clinicians, investigators, and other stakeholders within PCORnet to focus on research areas with crosscutting relevance for people living with ASIS conditions. The ASIS CRG is currently organized into three overlapping Research Interest Groups (RIGs):

The PCORnet Cancer Collaborative Research Group supports multi-site, patient-centered pragmatic trials and observational studies through its network of eight CDRNs, two PPRNs, and two HPRNs. Special emphasis is placed on developing informatics resources (e.g., adapting the Common Data Model to support cancer research, maintaining computable phenotypes), cultivating cross-network collaborations, and stimulating and assisting efforts to obtain extramural funding. Research foci are determined by participant and stakeholder interests.

The Cardiovascular Health Collaborative Research Group (CVH CRG) exists to catalyze high-quality, impactful, patient-centered research focusing on cardiovascular disease and cardiovascular health using PCORnet. We support communications and match-making between investigators with ideas about how to use PCORnet for research and potential PCORnet collaborators, we develop data resources in PCORnet relevant to cardiovascular health including preliminary data tables that can be used to support grant applications, and we support research interest groups focused on particular cardiovascular topics of interest.

Any researcher, patient, clinician or other stakeholder is eligible for membership in the CVH CRG given a stated interested in collaborating on PCORnet Studies with at least one specific cardiovascular health area of interest, and a commitment to respond to and facilitate “matchmaking” queries received from CVH CRG Leadership and to acknowledge support from the CVH CRG. All Members receive targeted communications and access to CVH CRG data resources and matchmaking services.

Nationally, there are staggering resources invested in diabetes/obesity care, prevention and research. The Diabetes and Obesity Clinical Research Group provides investigators with the resources and support of PCORnet to develop stakeholder-engaged observational studies and pragmatic trials. Our diverse group of over 60 patients, primary care providers, subspecialists, epidemiologists, health services researchers, and other key stakeholders aim to advance the evidence base to drive value-based clinical decision-making in diabetes and obesity care and prevention.

PRIDEnet and ADVANCE have partnered together to build a network of collaborators focused on disparities research, provide expert subject support to the PCORnet Front Door, and work internally and with other CRGs to build and execute research projects that address disparities, and promote equity in healthcare. This CRG also provides the PCORnet Data Committee with recommendations for enhancements to the PCORnet Common Data Model (CDM) to better support research in health disparities. The overall goal of this group is to promote health equity for vulnerable populations by advising on and generating proposal concepts that are of value to our patients, providers, and communities.

To engage salient stakeholders and leverage the PCORnet CDM for population health and surveillance projects that promote significant scientific and business development opportunities.

To engage salient stakeholders and leverage the PCORnet CDM, i.e., the expansion and development of social determinant variables, and existing health system demonstration projects for health services research that promote significant scientific and business development opportunities.

The Kidney Health CRG aims to facilitate clinical research that arises from patient-informed research questions and leverages the unique PCORnet dataset. Anchored by a team of informaticians and clinical researchers, the tools created by the CRG can be used by the research community to answer key questions about kidney disease epidemiology, practice variation, therapy, and the patient experience.

Kidney disease research is broad spanning, as it includes both rare and common diseases, numerous comorbid conditions, and relevance to virtually all demographic segments. The relationship of kidney disease to other major public health concerns such as cardiovascular disease and diabetes highlights the cross-disciplinary nature of kidney disease research, which has high potential to improve clinical decision-making and patient outcomes for millions of patients.

Recognition of the unique attributes of childhood that merit a special research focus is relatively new. The types, manifestations, and frequency of various diseases as well as the adverse event profile for medical treatments often differs between adults and children. Sadly, conditions such as hypertension and metabolic syndrome once considered adult problems have infiltrated childhood. Maturation of children’s physiology influences the qualitative and quantitative effects of medical products, which calls into question the use of hand-me-down results from medical product studies done among adults.

To address these and other pediatric challenges for PCORnet, we have developed a Pediatric Collaborative Research Group that is dedicated to supporting the development of multi-network research projects for children and adolescents, while advancing the sustainability of PCORnet as a research consortium.

The Pulmonary CRG focuses on a wide range of respiratory diseases (COPD, asthma, pulmonary fibrosis, OSA), which are highly prevalent in the US population and is dedicated to promoting pulmonary research through PCORnet that is prioritized by both the scientific and patient communities. Despite their prevalence, many of the basic measures of lung health (spirometry, exercise tests, sleeps studies, etc.) are not readily and easily available in Electronic Medical Records (EMRs), impairing the ability of researchers to assess these patients accurately. The addition of these data to the CDM will dramatically increase the value of these databases to researchers and potential funders.

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